A Partnership Approach to Diagnosing and Treating Your Epilepsy
As a neurologist and epilepsy specialist on Long Island, I have always found that the best healthcare is achieved when doctors and patients work together as partners in figuring out the diagnosis and planning the best treatment. At North Suffolk Neurology based on Long Island, NY, we place an emphasis on taking a very detailed history and will ask you to share with us step-by-step details about your seizures, past medical history, prior testing, previous treatments and how epilepsy has impacted your life.
I have been an active member of the patient advocacy movement for many years, lecturing nationally on attending to the psychological needs of individuals with epilepsy, and having served in leadership positions at the national Epilepsy Foundation and EPIC-Epilepsy Foundation of Long Island. I was also proud to publish a popular book entitled “The Essential Patient Handbook” designed to help individuals navigate the complicated healthcare system. Some of the discussion below is based upon contents from this book, as well as several medical textbooks we have published guiding physicians on the topic of neurologic differential diagnosis.
Consider the following. Imagine you run an auto repair shop. One morning, Mr. Jones brings in his car for repair. He meets you at the desk and says: I was driving down the highway on Rt 47. Then I made it turn on a main road. Then it started to rain and had to slow down. Then I drove for about 15 miles on a quiet road, and then speeded up again...
You might continue to listen patiently, collecting the details of the story and waiting to hear how this led to an automobile repair issue. Alternatively, you may decide to interrupt Mr. Jones and say, "Before you go into further detail, what is the main reason that you are bringing your car in for repair?"
Mr. Jones answers: “Well, I heard a new rattling sound coming from the back of the car". Then he gives you more details as you offer specific questions about the car problem.
So, what is the advantage of getting the main idea first? One reason is that it is difficult for doctors remember the details of a story without having a specific target question or goal in mind. Understanding the punch line of the story in the beginning allows the listener to understand what elements of a story are needed to clarify the problem, and which features are less important to remember.
This main problem or specific request for the medical visit is known to doctors as the “chief complaint”. Clarifying the “chief complaint” at the beginning of the interview gives a focus to the later discussion.
While the physician appreciates receiving as much information as possible, flooding your doctor all at once can actually take away from the ability to take an organized history. You will have plenty of opportunity to go into details in what doctors call “The History of Present Illness (HPI),” which is described later.
If you have a seizure-related issue, a chief complaint often falls into one of the following categories, and the main reason you are seeing the doctor is:
- You are having symptoms and it is unclear what your diagnosis is, or what is causing your symptoms. Perhaps you have had symptoms that are suspicious for a seizure but may be something else and you want the doctor to try to arrive at an accurate diagnosis.
- Your diagnosis of epilepsy is established, but you are having problems related to epilepsy, such as uncontrolled seizures, or medication side effects.
- You want a 2nd opinion. It is not uncommon for individuals to come to the Epilepsy Center at North Suffolk Neurology, seeking reassurance that everything that should be done is being done. In such cases, we often find other options that were not previously considered, such as changing medications that reduce side effects.
What do say do if you have difficulty narrowing your symptoms down to one problem? In such cases, it can be very helpful to write down a list of the main problems and indicate how long each has been going on.
- Persistent seizures since the age of 20.
- Feeling very tired on the current medications.
- Shaking or tremors of my hands over the past year. Could this be a medication side effect?
With this list in hand, you and I can establish priorities of the most pressing issues. We may also choose to postpone discussing the details of one or more symptoms until the next office visit, so we can focus on the main issue.
Your chief complaint doesn’t have to be a symptom that started recently. Perhaps your symptom has been occurring for a long period of time but you got concerned because the symptom has recently worsened or has become intolerable. Maybe some report on television or a frightening story you heard from a friend about the symptom has heightened your worries about it. Please tell me what your worse fears are about the symptom; I may be able to offer a lot of reassurance or clarify misconceptions you may have. For example, some of my patients are fearful that every time they have a mild seizure, that they are losing tremendous numbers of brain cells and this is simply not the case.
In the first or followup visit, preparing your chief complaint ahead of time can help you avoid what I call the “Oh, By the Way Syndrome”.
Let’s go back to our example of Mr. Jones. After dropping off his car at the repair shop, Mr. Jones presented to his epilepsy specialist to get his antiepileptic drug medication refills and for routine bloodwork. At the end of this routine office visit, and nearly out the door, Mr. Jones says, "Oh, by the way; last night I started to notice some itching on my chest and a few bumps, is this anything to worry about”.
Well, it could indeed be concerning. While the doctor has spent the office visit focused on routine issues, now he needs to bring Mr. Jones back in and start all over, worried that his patient may have a serious drug reaction. Had the physician known earlier on about the rash, he would undoubtedly have directed his primary attention to that problem first.
Sometimes the symptoms that are mentioned at the end of a visit are more sensitive subjects such as sexual issues, psychosocial problems or psychological difficulties. In our epilepsy research, we have found that issues like depression and anxiety for example, are very common in epilepsy but doctors often don’t ask about these problems and patients are often reluctant to raise the issue. Treating epilepsy is so much more than just trying to control seizures, and an open discussion between patient and doctor can lead to much improved quality of life for individuals grappling with epilepsy. Identifying these issues earlier in the interview will help avoid neglecting these very important topics of discussion.
Your chief complaint is not necessarily the same as your most severe medical symptom. The issues you want to raise with the doctor also reveal valuable information about how you feel the symptoms impact upon your quality of life and activities of daily living. If you feel that we are not adequately focusing on the problem which concerns you the most, please let me know.
Now that your doctor understands the main idea why you are being evaluated, it’s time to tell your story. A story needs to be organized with information about the setting, when the story takes place, who the characters are and what happens. The story about your symptoms that you tell your doctor also needs to be very organized. The name of this story is the “History of Present Illness” or HPI. In fact, the HPI may be the single most important part of your entire medical evaluation. Even with all the new fancy MRIs and brain wave tests used to evaluate epilepsy, there is nothing more valuable for arriving at a diagnosis, as a doctor and patient spending the time to get a complete history.
Sometimes people feel frustrated that they want to tell their story but the doctor keeps interrupting them. There may be a good reason for this. Very often, doctors want to guide the discussion by drilling down deeper about one part of the story, and placing less emphasis on other parts of the story. Doctors often shift to other questions because they are fishing for clues that may explain your symptoms.
A thoughtful doctor will carefully select each question and decide on the next question based upon the earlier answers. The questions your doctor asks in the HPI are each linked to possible diagnoses that can explain your symptoms. Each diagnosis has its own typical characteristics such as how the associated symptoms begin, how long they last, and what they usually feel like.
Even though you may not know what specific questions I may ask, if you have epilepsy or symptoms that could be seizures, you can prepare your answers ahead of time. Preparing your information before meeting with me is a really good idea, because you may not remember some important details. How do you this? Well, when you contact North Suffolk Neurology for an appointment at the Epilepsy Center, you will receive a detailed questionnaire that will ask you to describe your seizures. Descriptions of seizures often fall into what I call, the Who? What? When? Where? Whys. Let’s take a closer look:
Many of my questions about seizures related to the concept of “time”. For example:
At what age or on what date did the episodes begin?
Don’t sweat it if you can’t recall the exact date that a problem started. A good estimate usually suffices. On the other hand, try to avoid vague terms like “recently”. “Recent” for some means one week ago and for others means three months ago.
Other questions related to timing of symptoms include:
(If applicable), at what age or date did the episodes stop? What is the average frequency of episodes in a given day, month or year? What is the maximum amount of episodes you have experienced in a given day, month or year?
If you have epilepsy, it is helpful to keep a seizure diary, listing when the episodes occurred and what each one was like.
Yet another question related to “time” is: How long does a typical seizure last? In this context, it is helpful to distinguish the actual seizure from the recovery phase called the post-ictal state. Seizures can seem like they last an eternity especially for individuals witnessing a major seizure. However, most seizures typically last less than 1 or 2 minutes, and it usually the post-ictal state that lasts longer. On the other hand, seizures lasting more than 5 minutes sometimes don’t stop as readily as briefer seizures, and your doctor may suggest calling an ambulance in such situations.
Another important question is:
Is there anything that tends to bring on the episodes? If you have epilepsy, lack of sleep can sometimes lower the threshold for having a seizure. Has missing a dose of your antiepileptic medications brought on one of your seizures?
Speaking of medications, were there any changes in medications (starting a medication, reducing a medication) when the seizures occurred?
One of the most common mistakes in medical care is to forget about the effects of medications. Also, don’t neglect mentioning the over-the-counter medicines, herbs and supplements.
What are you typically doing when an episode comes on. For example, do the seizures occur only when you are asleep? Do you have time to get to safety before the severe parts of the seizure begin?
Perhaps the most important part of your story is a description of your seizures. Start by grouping your seizures into their different types based upon the way you experience the seizure. For example, you may have one type of seizure with staring and then recovering while other seizures could represent generalized convulsions.
Then for each type of seizure, describe your symptoms step by step. Does it start with a funny taste or an out-of-body feeling? What happens next? Does it progress to any shaking movements perhaps or problems speaking? Can you hear what others are saying even if you cannot respond? Does it lead to loss of consciousness? Do you typically fall down? Then when it is over, what symptoms do you have when you are recovering from the seizure? This period of time is referred to as the “post-ictal” state.
Why are all these details so important? For one thing, the nature of your symptoms can help me arrive at a proper diagnosis. Some symptoms may be classic for a seizure, and for specific types of seizures. Other symptoms may point to other diagnosis. For example, at the Epilepsy Center at North Suffolk Neurology, I am not uncommonly asked to figure out whether an episode of loss of consciousness was due to a seizure or from a fainting spell. A detailed history, such as fluttering in the chest followed by going limp may suggest that the episode was caused by not enough blood flow to the brain rather than an epileptic seizure.
Now it’s time to start all over again, but this time we need a detailed account from others who have witnessed the seizures. It is very advisable to bring a person to your office visit at North Suffolk Neurology, who has witnessed your seizures, or at least get a detailed account to convey to the doctor. Sometimes, I get on the phone and talk directly to the witness, if that person is not present at the office visit.
Why is this all necessary? Well it turns out that many people suffering from epilepsy may not even be aware that they experienced a seizure. Furthermore, a seizure can look very different to an observer than what is experienced by the patient. Many of my patients are completely unaware that they were staring or showing repetitive automatic movements (we call these automatisms), during their seizures.
Now what is another reason this is all so important? In fact, at major epilepsy centers like at North Suffolk Neurology, these details are extremely crucial when we evaluate individuals with uncontrolled seizures who are candidates for a potential surgical cure of their epilepsy. The symptoms you experience or signs you show to others during a seizure can give invaluable clues as to where seizures are coming from in the brain. And even though we perform the most sophisticated tests of the brain such as electrode recordings on the surface of the brain or super magnet MRI pictures of the brain, there is ultimately nothing more valuable than a doctor and patient investing the time to take a detailed history.
Please also mention any associated symptoms around the time or during an episode. For example, some of my patients on Long Island with epilepsy experience depressed feelings before a seizure, or in the hours or even days after a seizure. You might experience a major headache, a funny feeling in a part of the body, for example. Therefore, please be very specific on things:
Where is the symptom located?
If the symptom involves a small area, point to that spot. If the symptom radiates from one region to another, mention all the areas involved.
What does the symptom feel like?
This question describes what is termed the “quality” of the symptom. Try to describe the symptom with regard to timing: Is it steady or intermittent? Is it continuous but waxing and waning?
Use descriptive terms such as “sharp or dull”, “stabbing”, “pounding”, or “steady”.
How severe is the symptom? (Rate from 1-10, 1 is least, 10 is worst):
In addition to rating the severity, consider using descriptive terms such as “mild enough for me to ignore it most of the time”, “so severe, I couldn’t concentrate on anything I was doing” or “the worst pain I have ever experienced”.
Are the symptoms getting worse or better in severity or frequency?
I need to know if your symptoms are getting worse! This could be a red flag that something needs to be done pronto!
Impact on Function:
The next few questions speak to the importance of not only the symptom, but the potentially profound impact the symptom may have on all facets of one’s life. Questions include:
- How do the symptoms affect your functioning?
- Are you disabled by the symptoms?
- How do symptoms affect your mood?
- How do you think your symptoms are affecting your relationships, occupation, homelife, etc.:
These kinds of questions are less crucial for diagnosis but are more important for understanding how the problem impacts upon your quality of life. These questions insure that these important aspects receive a prominent role in the discussion with your doctor.
I have personally found it helpful to ask my patients about what they perceive to be the cause of their symptoms such as seizures and what their fears are about them.
New symptoms often provoke tremendous fear about dreadful diagnoses such as cancer. Yet, these ideas are often not shared with the doctor and only come out when I ask my patients. This is so important because I can often provide a lot of reassurance and my patients realize that they were worrying unnecessarily about certain ideas. I might ask:
- What are your ideas about what may be causing the symptoms?
- What is your worst fear about what is causing the symptoms, or about the problems it may create for you?
Did you have similar episodes in the past?
Sometimes, the interview is so focused upon the present symptoms, that your doctor forgets to ask if you ever had the problem before. If you did, that could change everything. For example, some of my patients with focal seizures may have had a history of seizures during illnesses with fever, when they were very young. This could be a clue to some specific types of epilepsy syndromes.
In summary, you can really help our Long Island-based epilepsy center, figure out what is going on by telling your story carefully and accurately. Preparing your story ahead of time can make a great difference.
Let’s start out by playing a game. Here’s the contest: Over the next five minutes for $200,000, name all your past medical illnesses, when they occurred, who took care of you, what tests were done, what the results were, what your diagnoses were, how the illnesses were treated, and whether you were in the hospital. While you’re at it, throw in your early developmental history, your childhood illnesses, and list any bad reactions you had to medications.
Sounds crazy; how can anyone be expected to remember all of this information off the top of their head, without any warning or preparation?! Yet, this information, also known as the past medical history (PMH), is requested in this kind of fashion, all the time, especially when patients meet a doctor for the first time. There must be a better way.
In fact there is a better way; i.e., prepare Your Past Medical History BEFORE you see the doctor. If you have epilepsy, preparing your past medical history is especially crucial. We published a textbook for doctors specifically dedicated to epilepsy and co-existing medical conditions, because Epilepsy rarely occurs in isolation; rather it occurs in the context of many other medical conditions. There are two sides of the coin here. Sometimes the other conditions can give rise to epilepsy or to other symptoms that could be mistaken for seizures. Take the example of major head trauma or a stroke which can later cause seizures. On the other hand, a person presenting to North Suffolk Neurology with an episode of loss of consciousness, who has a past medical history of major heart rhythm problems, may in fact have heart-related fainting episodes that can be easily mistaken for seizures.
Sometimes the treatments we use for medical conditions can give rise to seizures. For example, some of the water pills used to treat high blood pressure, can in unusual circumstances lower the sodium value in the bloodstream to an extreme value, and that can induce a seizure.
On the other hand, seizures can cause medical complications. For example, a bone fractures can result from severe seizures. Furthermore, the treatments we use for epilepsy can cause medical issues. Have you experienced an allergic reaction like a skin rash after starting a new antiepileptic drug?
Here are some treatment questions that neurologists at the Epilepsy Center at North Suffolk Neurology may have to consider when treating epilepsy in our Long Island patients, in the context of other conditions:
- What are the best antiepileptic drugs to use for a patient who has liver disease? In that circumstance, if we choose an antiepileptic drug that happens to be handled (or we say metabolized) by a poorly functioning liver, a person can get toxic on the medication.
- How should we adjust the dose of an antiepileptic medication for a patient on dialysis for kidney failure?
- What antiepileptic drugs can be safely prescribed in pregnancy and which should be avoided?
With all the information we epilepsy specialists need to review, it is very easy to miss a small but crucial aspect of your past medical history. Please help us remember the important facts about your background by maintaining an organized list and description of each medical problem, and prepare that before you arrive for your visit at North Suffolk Neurology. And by the way, it doesn’t hurt to sit with a family member and work on the list together, since others may remember things that you have forgotten.
So what does the PMH include? The PMH is a summary of the major landmarks in your prior health including elements of good health (e.g. normal early development, pregnancy) as well as illnesses. If you prepare your PMH before seeing me, don’t go crazy giving tremendous detail for each prior illness like you did for the History of Present Illness (HPI). Give just enough information for the North Suffolk epilepsy specialists to understand how active particular problem is, and how it affects your current health.
Here are some tips for preparing it:
- Adult Illnesses: Mention any illnesses, surgeries, accidents or injuries you incurred in the past. Also include any psychiatric diagnoses.
- Pregnancy: Give enough detail for us to use it as a reference in future gynecological or obstetrical healthcare.
- Childhood illnesses and immunizations: This can be very difficult to recall but this information is worth getting from your prior physicians, or from family members. Questions about childhood illnesses and past vaccinations will come up repeatedly when seeing new doctors or even on typical employee health forms.
- Tell your doctor how each problem affected you. For example, a bout with the flu in some could be merely a severe cold and for others could land them in the hospital with inability to work or function at home during the recovery period.
The next thing I want to talk about is the question: “Who’s in Charge of Your Care?”
I see many individuals with epilepsy who are also seeing other specialists like a cardiologist and rheumatologist, but they don’t have specific doctor coordinating the care of all the different physicians.
Think of a musical orchestra. No orchestra would sound very great without a conductor. So who is conducting your symphony of medical problems? With so many specialists taking care of different medical problems, what happens if Doctor A assumes that Doctor B is taking of your high blood pressure, while Doctor B assumes Doctor A has taken care of it? This is a very common problem in medicine.
Try to get yourself your own conductor (perhaps your internist or general practitioner) to orchestrate the different musicians involved in your healthcare, making sure that each of your problems are being dealt with, and that one specialist’s treatments don’t conflict with another’s.
Has Something Like This Happened to You?
You are seeing your 2nd doctor to evaluate episodes of falling with loss of consciousness. You know you had many prior tests and you recall being told about some kind of abnormality on an EEG. You also recall that something was seen on either the CAT scan or MRI of the brain, but you had the impression that the doctors were not concerned about this finding. Your doctor is interested in seeing the reports and ideally would like to review many of the actual tests herself. However, you cannot remember the specific locations where each test was performed, and you only remember some of the names of the tests you had.
If this is you, don’t feel alone. This is one of the most commonly encountered problems, in which the physician begins a fresh evaluation of the problem that has previously been investigated, but no information is available. The doctor may need to track down each prior test, and may feel paralyzed about proceeding with the testing until she collects the prior testing information. Sometimes, the doctor simply goes ahead and orders more of the same kinds of tests, and it is possible that some were not absolutely necessary.
To make a proper diagnosis, to decide on further testing and to decide on a treatment plan, the Epilepsy Center at North Suffolk Neurology, really needs to know about any prior tests that are related to your epilepsy and other current medical problems. Without these test results, we sometimes have to postpone making decisions about diagnosis and treatment, and valuable time will be wasted collecting prior test results. A preferable alternative is to prepare as many test reports and ideally, actual copies of tests, before the office visit.
In addition to bringing prior test reports and studies to the office, you can help us by organizing the list of tests you have had. The form we will provide you with from the Epilepsy Center at North Suffolk Neurology, will guide you on listing your prior testing.
If you have epilepsy and have seen doctors before, it is very likely that you have undergone a test known as the electroencephalogram or EEG. There are several types of EEGs, such as routine EEGs that last about 20-30 minutes, ambulatory EEGs in which you take the EEG box home with you to record over an extended period of time, in hospital video-EEG where the EEG is run for an extended time while you are in the hospital often with the hope of capturing actual seizures, and sometimes what is called intracranial EEG monitoring during an epilepsy surgery evaluation.
For each EEG you have undergone, it is very helpful to provide the doctor with the following information: Date the EEG was performed, where it was performed, and the type of EEG.
Even if you have copies of the actual test to show the doctor, please take the time to write the test result on the form if you have that information. This will help organize the findings for your us to review. But, how can you write the result if you don’t understand all gobbledy-gook of medical terminology? The answer is that virtually all medical test reports conclude with a summary or impression. You can write this final impression on the form and indicate that you have the full report as well.
For EEGs, the final impression may be “normal”. Sometimes it indicates slowing in a part of the brain which can suggest a disturbance in that area. Neurologists often look for markers of risk of having seizures called spikes. These are sharply shaped waves that often indicate the area where seizures may arise from. They can also sometimes differentiate seizures that are of the focal variety versus generalized types.
Another common test is a picture of the brain called the CT Scan or MRI. For these studies, it is helpful again to list in order the date it was performed, the place it was performed and a summary of the result. Please specify if the CT Scan or MRI was performed with the use of an intravenous injection of “contrast”.
Since memory and thinking problems are common in epilepsy, a testing called Neuropsychological testing may have been performed to assess your strengths and weaknesses in these areas. Please include these very important results if you were tested this way.
You may have had many blood tests in the past, and if you are aware of any specific abnormalities, please let your doctor know. For example, some antiepileptic drugs can cause a drop in the sodium count. Others may reduce the white blood cell count. Your doctor will also be interested to see antiepileptic drug levels that can give a rough estimate of how much of the drug is getting into your bloodstream.
A common question from my patients is: “Am I entitled to my prior medical records, so I can show my doctor?” Answer: Absolutely! While the actual medical record belongs by law to the healthcare provider or medical center, you are entitled to a copy of the information in the medical record. The original record cannot be removed from the doctor’s office or hospital, but you are entitled to receive copies by paying a reasonable fee. To obtain a copy of the record, you will be asked to sign a release of information form. This is actually a good thing since it insures that confidential medical information is not distributed to anyone without your permission.
Many of our patients from Long Island or many parts of the United States, come to see us for a second opinion, especially when prior treatments do not appear to be working. The intake form we will ask you to complete if you are a new patient at the Epilepsy Center at North Suffolk Neurology will also ask you to describe in detail the prior treatments that you may have received to treat your seizures. We need to know the names of the treatments, as well as the dose. Sometimes we find that an antiepileptic drug was stopped because the patient did not feel well on the drug, such as feeling tired or dizzy. However, by knowing the specific doses that were used, how it was started and how high the dose was advanced, we may learn in fact that the drug was effective and simply needed to be introduced more slowly. On the other hand, we need to know about side effects you may have experienced with each medication, such an allergic reaction which would probably lead us to avoid trying that medication again.
As the former director of hospital-based epilepsy centers that conducted epilepsy surgical procedures, we are also very interested to understand what prior surgical therapies may have been tried in the past. In such cases, we will ask you to arrange for old records to be sent to North Suffolk Neurology, so that we can review these in detail.
Epilepsy is so much more than simply having seizures. In fact, epilepsy can greatly affect quality of life. At the Epilepsy Center at North Suffolk Neurology, we will ask you a lot of questions about your life, such as how epilepsy has affected your ability to drive, your employment, your relationships, and what your goals are. The goal of our evaluation is to advance the best quality of life. Should you decide to have an evaluation at the Epilepsy Center at North Suffolk Neurology, we will consider ourselves very privileged and will devote our best efforts to figuring out the problem and suggesting the best solutions.